I've been on Erbitux for some time (about 12 weeks now). My rash seems to 'move' every couple of weeks. I'll have it on the face, then my chest, then my legs, then my scalp, etc.
My doctor had me try T-GEL shampoo and it has worked remarkably well. You have to keep it moist though as the T-GEL and similar products will dry you out if you let them.
-steve

Steve I had the rash on different parts of my body also. The doctor prescribed an acne medication for it and it seemed to help. Mine never itched or anything, just got little white heads on it like a pimple. I just told myself that at least it was working.

Patty

Went to the doctor today and they are not giving him anymore Taxol as it is not working. Next Wednesday dr is starting him on Erbitux...Has Erbitux helped anybody ? We are going to the ENT dr. in Pgh on Monday. The oncologiest here said that maybe the ENT dr. may consider the Cyber Knife since the tumor is growing in his mouth. (it got larger) that's what the drs. say -- I can't look in there. Shame on me. That's one thing I can't do. I get too nervous. Does anybody know anything about this Cyber Knife procedure. Of course, the dr. may not think that he is a candidate for it. I don't know. I've been very weepy today and I cried the whole time I was in the doctors office. I've been holding up quite well considering. I think I know what triggered my depression, not only hearing that the taxol wasn't working, but when I got home yesterday from work, there was a card addressed to me. Much to my surprise, I got a sympathy card from an acquaintance who i have'nt seen in quite sometime and in the card, she puts in a long letter about Jim. Where she got this wrong news, I have no idea. Can you imagine getting a sympathy card and a beautiful letter about your spouse..while he was sitting in the chair next to me...i, of course, said nothing.......I've chirped enough. I'd appreciate any input in re to Erbitux and the Cyber Knife. --claudia

Oh Claudia, how awful getting that card! No wonder you are upset, that is terrible. Sure hope you dont now get more as the incorrect news spreads.

Sorry I dont have info on what you asked, just wanted to say how sorry I was to hear things arent good right now. Being a caregiver is such a hard job, its ok to cry. Everybody needs to cry sometimes.

Claudia I am so sorry that you were hurt further by the card from someone that I am sure meant well but was misinformed.

I just finished my Erbitux treatments Jan 2 so I can only tell you that so far so good. There are several others that have had the treatment though and I am sure someone will be able to answer your questions.

I will be thinking of you both and keep you in my prayers.

Patty

Hi Claudia, I was given Erbitux in cunjunction with my chemo and radiation. It's worked great so far for me. It's getting rave reviews. When I get my check-ups, the Drs are always telling me more good news they've heard about it working so well. The FDA seems to love it. If I'm correct, it was first approved by the FDA for colorectal cancer, then H&N and now they are trying it on others. These anti-bodies are very promising. I'm sorry but I know nothing about the cyber knife. They used a real knife on me. I'm also sorry you got that card. My friend who's dealing with terminal cancer, she gets chemo one a week and so far it's keeping her alive, got a sympathy card in the mail for her. She just laughed but I think it hurt her, also. Take care and let us know how your hubby is doing. You caregivers have the toughest job of all, please take care of yourself. Hugs, Carol

I had 8 treatments of Erbitux. I had some pretty severe rash/acne reactions which the doctor said was good news. The more reaction the more effective it is in treating the cancer they tell me. I wound up with hundreds of pimples on my face, scalp,neck and upper back. Less so on my chest. It left a good deal of scarring, something like you'd expect to see with severe acne in a teenager. I can live with it. I am alive and doing well now, 6 months out of treatment.

Thank you all for your responses. The little bit of hope will get me through the day. One more thing that is bothering me. Help me out here someone please. I had 3 opinions from 3 drs.
Two said to try Taxol and one doctor said Erbitux . I chose the Taxol treatment which didn't work. Maybe if I would have started with the Erbitux Jim would be better off today. Now, I feel guilty !!!! He started out with Cisplatin while he was going thru radiation last year, then the taxol, now to start Erbitux. He is completely bald (i tell him he looks cute) anyway, will his hair start coming back soon ? It doesn't matter, but he was asking me......I told him that I would check with my friends on the board. I want everyone to know that I read everybodys posts and my heart goes out to everybody. I'm not very computer savvy and I can't keep everybody straight, but I want everyone to know that when i read a post and don't respond , I think and prayer for everybody every single day, so please don't think I'm ignoring anybody. What a group we have here....!!!!!!!! Noone else really knows what we are going through -----Love, Clod

Please don't feel guilty! My doctor has been really wonderful to say, here are your choices - here are the pros and cons, and there is NO wrong answer. Try not to spend any time regretting the steps you've taken so far. The 'what ifs' can really eat at you if you let them.

His hair should start coming back not too long after he's off the medication which makes it fall out. It takes time - in my case even when hair started to grow back, it was verrrrryyyyy sllllloooooowwwww.
Now I just shave it all off anyhow, I got used to the look! And I guess a bonus of being back on chemo again is I don't even have to do that but about every 5 days or so!
-Steve

Claudia You have no reason to feel guilty. My surgeon told me that everyone's cancer is different and that is why everyone responds to treatments differently. Won't it be grand when they can genetically map the cancer by patient and then treat it on an individual basis? There was a very positive article in Cure about the Erbitux and I am sure there is information here in the Cancer in the News section. What I liked about it was it did not make me sick or cause me to lose more weight.

My hair also started to return shortly after I stopped the chemo and was having the Erbitux with radiation. At first it was really nappy but it got softer. Now it is coal black and gray instead of dishwater blonde, but I truly could care less. I comb it straight up for now because that is the way is seems to be growing and I can.

Patty